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585414 tn?1288941302

Language for People with Disabilities/Ideology

I know people had some questions around the terminology I used "consumer" which is increasingly used for a person with a disability and its origins are specific to the independent living movement. Some groups use this term. Some people do. It simply means a person with a disability and even within the independent living movement some may use other terms. But what would people call themselves? I know my doctor and psychiatrist refer to me as a "patient" and in the studies I've been in as a "case" but since we work together it doesn't concern me. I just always got upset at places where it was staff vs. clients, especially when some of the staff had disabilities as well and it was great when someone I knew who worked at a clinic, on my encouragement disclosed her disability and thought of other consumers as equals.
But more importantly how do people see themselves? And what terms do they like to use? As to what I have of course schizoaffective is in the ICD-10 so technically its a "disease" but I prefer "person with a psychiatric disability" and with tardive dyskinesia "person with a neurological disability". But a "disability" is not a "good thing". It does impact on your life but to me using "person first" language instead of calling myself "ill" or "sick" makes the idea of recovery and getting on with life more palatable. But everyone as a right to their viewpoints? Not so much what you call others or what you are called but how would you liked to be referred to ideally? What terms? And why?
  
16 Responses
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604266 tn?1236358985
I think we do understand eachother better at this point. That's all I was trying to do. We're on the same side.

And yes def I was just using the wrod inmate as factual not as how I see someone. I wanted to put emphasis on what kind of setting I worked in. I see everyone I've treated as people. No different from me or you or anyone else.

But the reason I don't disclose about my own emotional illness is because of transference issues and boundary issues. I think in some settings it's def okay and in others it's not.
If I was treating my sister(is she wasn't my sister) I wouldn't disclose it because many who are dealing with BPD have boundary issues and need to see their therapist as a therapist and in no way a peer because it scewes the boundaries and can upset treatment.

Working with the prison population I couldn't disclose anything about msyelf even if I wanted to. You just can't when you're working with people who are dangerous and have raped and murdered. It would be dangerous for myself.

It all depends upon who your working with and where. When your working with a client disclosing can really have a negative effect of someone's treatment and the boundaries that have to remain for theraputic puproses.

But I do think peer counseling is a wonderful thing. Peer to peer counseling can do alot of benefit. There is an agency in every county that provides services free of chage as a not-for profit agency that has groups and peer counseling. It's a place for someone to go to get help in structuring their day and meeting other people.
There is also groups for family members and children. It's really a great resource that few peeople know about because not-for profit mental health agencies can't always advertise sufficiantly and so depend on other angencies to get their name out there and use fundraisers as a way to advertise in the community.

Many of the clients are staff also and do peer counseling. It's a great agency. And although I make no money from talking about them I don't know if I'm allowed to mention their name here.

Anyway, the terms I use def have nothing to do with how i feel about people personally. To me everyone is the same whether they have a mental illness, physical illness or neither.
I would hate if someone saw me as less than or talk to me in a way that made me feel that I was less equipt to deal with things because I deal with PTSD and anxiety so I don't do it anyone else no matter what the label may be.

The only difference between one diagnois to the other is the symptoms not the person. Either can be devestating, either can be empowering depending on how you use it and neither make anyone less than.
Ya know what I mean

Amph
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585414 tn?1288941302
Yes I see your point of view and it does make sense. Actually its very hard for anyone even a clinician to make a diagnosis over the internet. They'd have to see the person first to have a full understanding. I don't believe in medications being prescribed over the internet. Of course a doctor or psychiatrist here would have a fuller understanding as a clinician and could better explain things within their judgement and knowledge.
  I just try to explain things from what I've been through and what I might know and the point is for a person to have some ideas or suggestions to bring to their psychiatrist, not in anyway to second guess them. I've actually seen a lot of posts where people were afraid of what was going on and then when I gave them some idea as to what in my knowledge as a consumer it might be, they were reassured and decided to take the ideas to their psychiatrist and discuss it with them. But I do agree with what you said as being of concern and feel free to start a thread in the suggestions forum on it as it is warranted.
   I guess I just see things a different way. People always put me down and said I was a bad person or crazy or hated people and when I learned I had schizoaffective disorder it didn't scare me. It made me realize that all those disturbing thoughts I had didn't mean I was evil (remember this was before treatment in 1990, I was paranoid) and that they were treatable. If someone is posting they have all these scary thoughts they don't know where they are coming from, yes of course you don't know what exactly is wrong but in knowing what they have is treatable with follow up with a psychiatrist that makes them understand more what's going on. And if someone is having suicidal ideations then I think we all know to inform the administrators as policy. And in the outside world that's the time for them to get help immediately before things get worse and for people to encourage them actively to do so.
   And one thing I misidentified was your usage of the term "inmates". As you worked with a prison population that's just factual terminology. And even within the independent living movement some people don't use the term consumer. And yes of course my psychiatrist refers to me by Mr. and then my last name. He would just call me a "patient" in referring to me to another psychiatrist or a "case" as regards the clinical studies. But since I've been dealt with respect as an advocate when I conducted testimony regardless that's the most important thing. And I know someone who was a social worker in a state psychiatric hospital and although it was her decision, she disclosed as a consumer. Not everyone is going to this and its not even a matter of terminology and of course she had more understanding than the people she was working with. They just knew they were talking to a peer regardless and that's the essential part.
   And as for tardive dyskinesia in no manner would I want my disability to be a reason for people to stop treatment or encourage this (the site that I mentioned "patient education tardive dyskinesia" if you look on it fully states "many of these treatments are neccessary"). Its just the me posting is not the me you see on the rare occasions I emerge into the outside world (apart from around the neighborhood) to represent people for benefits or to advocate for them and since its a full blown neuropsychiatric disability in me they want to know what it is and where it came from so I explain. And people understand that their psychiatrist should do movement tests to identify it before it gets as advanced as in me and that Clozaril is then an option. And when I testify on treatments in development I fully state "I want people to have the mental recovery I did without the neurological disabilities" and all the providers I've met have responded very favorably to that and for consumers on the idea of "partnering on recovery" as I stated in my latest journal entry and wherever I do presentations. And yes my psychopharmocologist does check my journal entries for accuracy. And thanks for your input. I believe we understand each other's perspectives better.
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604266 tn?1236358985
My concerns were not on your advocacy at all. I wish you would re-read my PM to you.
The converstation only turned to advocacy when you brought it up as you told me I'm a terrible therapist and don't care about the people I treat.

My concerns were about labels and giving someone a label before they even saw a psychiatrist who could give them an assesment.
And I only questioned your intentions in regards to telling someone what diagnosis they had. Not your advocacy intentions overall.

I still stand my belief that it's dangerous to tell someone they have an illness they may not have over the internet because there's no proper suppport to help someone deal with a certain diagnosis if they have negative feelings about it.
Someone may log off and start to get very upset of afraid that someone told them they had BPD or schizophrenia and there is no proper suppport to help them cope at that time.
I know for myself. If someone told me what I had and then then my psychiatrist told me I had something else I'd be very confused. And I may get angry at the person who told me I had something and put me through the panic.
Not everyone would feel that way. But there are so many risks in giving out a diagnosis over the internet which is why even the experts in the expert forums won't go there. My intentions were for you to protect yourself also. And not put that kind of responsibility on yourself.
Some people get very upset when their psych tells them what they've diagnosed them with because they get scared. But at t a sessions there with someone who can help them. Over the internet the persons alone with a screen infront of them.'
There's no person to person interaction and comfort.

That's all I ment and was trying to voice to you. I don't want to see anyone hurt including you. If I didn't care about your feelings I would of said nothing. Your an intellegant person who provide people alot of help.
I don't want you to put that kind of responsibility on yourself. What if someone can't handle a label and they don't cope in a way that's healthy. I don't want anyone to have to have that on their shoulders.
Trust me I've seen it. Even my sister got very upset with her diagnosis. She just cut herself nearly to death because she felt like she was sick and ill. If she didn't have help when they told her then who knows if she would have gone fruther that night.

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604266 tn?1236358985
Oh I didn't see you replied to me. I'll read it now
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604266 tn?1236358985
Oh I don't mean the last sentance in any bad way or that I know you. I just know that many people in your area are familiar with the work I've done with the agencies I'm involved with and you may be also. So that if you knew who I was you would know that you really have misjudged me bevcause I care emensly and have put my heart and soul into doing what I love.
That's all I ment.
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604266 tn?1236358985

But if it's how we each use it then what it means in the long run is what it means to us personally and to the person we share that relationship with.

So how can someone else judge how we ourselves are using a term and what we feel when we use it?

I don't call my clients "consumers" because they don't consume me. They don't use me until I'm sucked dry. And that's why many people dislike the term "consumers" because that's the feeling it gives.
Infact I don't call my cleints anything but by their name. When a term such a client is being used by a professional it's being used as a way to refer to someone who's seeking your care who's name you have to protect.
I've seen the word "comsumer" when refering to a counties economics in regards to those percentage of people who seek mental health treatment in a county.
And we are called consumers at that point because it is describing both patients and "clients" who are using the counties available resources and how much money is spent in a year keeping up those services.

So to me using the word "consumer" when speaking about a "client" is to put an economic menaing  on them instead of refering to the actual PERSON whom I'm treating. Which to me is an innapropriate term in that refrence.

You may be ignoring my post ILADVOCATE. But you can't just offend someone and then pretend you didn't. You have to be accountable for what you say to people. It's not about who's right or wrong. It's about respecting another human being. And you tried to hurt me by using what I love against me.

I've been trying to fix this issue by explaining my views and you always just report me for it instead of being willing to understand or be accountable for what you say or do.
I'm not being cruel or attacking you and I think you know that. I'm standing up for myself and saying..Hey, what you said to me wasn't okay or right.

And now that I don't think this will be deleted I'm satisfied with feeling like I've been given the courtisy of showing you that you attacked and judged someone without even understanding how they felt about something.
I want you to understand that people use certain terminology for certain reasons. No professional uses terminology which they see as insulting or deemening to those they treat. And no professional uses terminology their clients feel uncomfortable with. But that doesn't matter because you use someones name...you don't use terminology.
Termonology in mental health is only a way to protect someones name and personal information. I can't say I'm treating "Bill". But I can say I'm treating a "client".
I only wanted the chance to stand up for myself. Its a chance you and everyone and anyone deserves.
If you believe in freedom of speech than you should believe in everyones right to stand up for themselves and to know that what they say when it's free from attack or judgement won't be deleted.

And that's all I wanted. To know that you can allow someone to stand up for themselves.

Trust me when I say your judgements are wrong and if you knew my name you would know you judged me unfairly. Advocacy is a small world in downstate NY.
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585414 tn?1288941302
What I do think is interesting is how both sides see each other. I am seeing a different neurologist now because mine is in recovery from a major heart attack. He almost died and they found a new life saving method of treating heart attacks to save his life. I won't detail the paper for confidentiality reasons but he discussed his recovery. I do believe disability is a universal experience and as for the terminology its how we use it and what it means in the long run.
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585414 tn?1288941302
Yes I accept that people use their terminology. My psychiatrist still calls me a "patient" and the study I am in a "case". When I presented my testimony for that psychiatric hospital with their express permission and consent it was as a consumer advocate but when the study is written up on my recovery with glycine as a novel antipsychotic agent it will be a "case study". I don't think you are wrong to use the term "client". I was speaking about an ideological perspectives and disclosure and I was stating my point of view. I don't believe any advocacy I have done would detract from the vast knowledge of professionals which is where I obtain the information I post from and clearly their knowledge is beyond mine.
  I don't disrespect you as a therapist but you did have some concerns about me as an advocate and I advocate for many things, not just mental health and within the mental health field for an end to discrimination such as the signing of the mental health parity bill and the upcoming Community Choice Act. I do speak about my disability because of the severity of it but just to get it identified and treated in other people and for new treatments to be available that won't cause it not in anyway to have people be against treatment. I'd be happy to have you post here about your overall perspective on what ideology to use and some of your advocacy and yes I am interested.
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604266 tn?1236358985
Do you really accept that people use their own terminology?

Because last time I checked you attacked me telling me I must be a horrible therapist and that I don't care about anyone I've ever treated if I use the term "client".

They can keep deleting my posts when I keep asking you this. But now that you've made a thread about it stating the opposite of what you've accused me of, I feel it's more than appropriate to ask this question.

I don't really need an answer. I just want you to think about why you would attack me for using a term you're suddenly saying is okay to use.

I don't feel I'm a bad anything to use the word "client" whether in regards to me or to someone else seeking treatment no matter what diagnosis I have.
Does a doctor who has heart disease insult someone he see's by calling them his patient even though he has a medical illness. Should he not be able to call them his patient because he's being treated by a doctor for heart problems?
Not in my eyes.

Strange.

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585414 tn?1288941302
That's a good point. With person first language one says child with autism. Would it offend you that way? Autism as a term sounds neutral to me. Autistic does not. Schizophrenia makes people think "split personality" although that's not how it was defined originally (it meant "split in the thinking process") so I would have some concerns. I think bipolar is a more accurate terminology than manic-depressive and I'm glad they replaced it. Its difficult discuss borderline personality disorder with people who have it because its a disturbing sounding term but it is clinically accurate to an extent. However, mental retardation is a term to me that must go no matter how its used.  
  Developmental disability can replace it to an extent but that is a large term. Both autism and mental retardation fall under it and are totally seperate disabilities with seperate needs so I would replace the mental retardation. I'm not sure with what but it is used as an insult all the time and not just by kids. The problem is when it was replaced by developmental disability people joke to someone "are you a little developmental?". I do wish people would phase out the concept of using a disability as an insult though. And especially the thinking behind it.
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Avatar universal

I don't use the word, "autistic" to describe a child with autism. It sounds like you are classifying that child in the same category as a robot. It disgusts me and I think we need to quit using that word. Austim is a neuro-immune disorder.
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585414 tn?1288941302
Well according to the Americans with Disabilities Act, a disability is anything that "limits one or more major life functions or will result in death". Its hard to say because yes schizoaffective disorder as well as tardive dyskinesia are diseases in the ICD-10. I just don't like the teminology "sick" or "ill". But they do limit some abilities of mine.
   But let's look at common disabilities. A blind person can't see. A deaf person can't hear. A wheelchair user (prefered terminology) can't walk. And depending on level of mental recovery, there are some things people with psychiatric disabilities can't do (I don't think anyone likes to hear "its all in your mind"). But the ADA is an empwering document that protects our rights. But within the terminology I use I don't say "I'm disabled". I say "I am a person with a disability". Person first. However, my disability is there and it does physically limit aspects of my life. I am homebound But not my ability to reach out to people. I think of Ed Roberts, the founder of the independent living movement who spent his whole life in a respirator (then called an iron lung) after having been paralyzed by polio as a young person. It limited a fair amount of what he could do but not his ideals and his visions which I try to live up to. That's where the terminology comes from and why I use it.
    Everyone is free to use whatever terminology they feel comfortable with but when you ask for a "reasonable accomodation" so you can perform the "essential function" of a job and are able to get hired you wouldn't have gotten that right if it weren't for the ADA. And that defines you as a person with a disability.
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Avatar universal
I do too ChitChatNlne.  When my son was in school he was labeled as LD.  I would tell him that he just processed things differently, which meant he was more creative.  He was satisfied with that and he did turn out more creative.

By Soc. Sec. standards, I am disabled.  I, however, look at myself as being handicapped (limited in certain situations).  If one is called disabled, others think they aren't capable of anything.  That is because of the stigmas we still have.

Take care,
VaBreeze
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168348 tn?1379357075
In the world of learning disabilities, I've typically heard the phrase "learning challenged" used in the school systems or "learning disabled" .. however, I prefer the first as it is more encouraging to the mind.
C~
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606078 tn?1247264553
This is an interesting thread. I really never thought of myself as disabled, or handicapped. Up until March of this year, I was trying to get over a knee replacement, but I kept getting worse. I was then dx with Fibro and cfs.  I now just think of myself as sick. I am disabled because I can never work outside the home again, it's hard enough to get things accomplished in the home.
It doesn't bother me to be referred to as either one. As long as it's spoken in a respectful manner.

gentle hugs
Angel
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694961 tn?1228732588
I have seen the oppressed adopt the language of the oppressor to good effect, for example blacks calling themselves '******' and gays calling themselves '******', in a proud way, thereby capturing the weapons used to oppress. I have a disabled stepson, and have heard the term consumer used in the mental health field, and being puzzled as to its relevance. My boy is brain-damaged, crippled, head-injured, whatever, it doesn't change him. Sure, he gets called 'handicapped' in a taunting way by kids who know no better, and gets hurt, but its not the words, its the manner, context and tone in which they are used which are important. I just tell him its because they don't know him, and what he's capable of. In Cambodia, I had trouble finding a resource centre for 'disabled' but as soon as I said 'handicapped', everyone understood.
So to answer your question, I don't think the vocabulary matters, its more the context that determines whether adddressing someone is respectful or not
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